Between our two kids we've got apraxia of speech, sensory issues and attention deficit disorder with a side of anxiety, compulsive behaviors and, depending on the week, tics. Things may be complicated in our house but, hey, at least they're unpredictable.

Wednesday, April 19, 2006

Tenex For Tics

Max is now taking a blood pressure medication called Tenex. Because it’s done such an amazing job of reducing both his tics and impulsivity, it’s actually succeeded in its originally intended purpose of lowering blood pressure.

Mine.

Since starting him on the new meds I’ve been successful at things that were once nearly impossible: getting Max to turn off his GameCube, eat something besides waffles for breakfast, and sit down to do homework for five minutes.

The highlight was the day I took him to Chuck E. Cheese and Toys R Us. I knew it was a risky move as both destinations are places where conflict is inevitable, whether it’s Max asking for yet more tokens, complaining that he doesn’t have enough tickets for a good prize, or demanding half the toy store’s inventory. But he was so surprisingly cooperative, polite and compliant that as we sat eating our lunch I couldn’t help but think: “This is what it’s like to have a normal child.” And then I corrected myself: “A neurotypical child.”

The Tenex has also eliminated the tics that were causing Max such distress. He seems to have acquired a new one in their absence – a head shaking thing – but it’s not nearly as severe or frequent its predecessors.

He still has his moments, of course. But it’s truly as if he’s a different child. We’re seeing a much bigger improvement than we did when he was taking stimulant medication.

His psychiatrist, Dr. K., indicated that Max may need additional medication – another round of stimulants to help him focus and an antidepressant to help with his anxiety and compulsive behaviors. The thought of him requiring three medications is overwhelming and frightening. I have no idea on how I’ll sell Dave on the idea considering how uncomfortable he is with Max on anything.

I’ll worry about it when the time comes. In the meantime, I’m just grateful for how much more controlled Max is these days. There are fewer outbursts and he’s much more compliant. the atmosphere in our house is much more relaxed.

That one small blood pressure pill has brought a calm to our whole family.

84 Comments:

At 7:50 PM, May 11, 2006, Anonymous Anonymous said...

My son, who is 5, is also taking Tenex. I check your blog daily because your plight sounds so similar to ours. Chalk this up to one more thing in common!

 
At 8:07 PM, May 11, 2006, Blogger Debbie said...

Thanks for checking in so often! Is your son taking it for tics and impulsivity as well?

 
At 8:02 PM, May 20, 2006, Anonymous Anonymous said...

My son is 6 1/2 and is finishing kindergarten. He is on Concerta 36 mg for ADHD, and just (today) started taking Tenex for tics. The tics have been around since at least age 4, but used to be much more intermittant, much less persistent, etc. They increased after starting Concerta last November, but the benefits we see from Concerta outweigh the tics at this point. So, now we've added Tenex. I'm curious how your Max is doing, having been on the Tenex for several weeks now? Is Max on some time of ADHD medication in addition to Tenex? Your Max sounds a lot like my dear Lucas...

Thanks for your blog!

 
At 11:15 AM, May 22, 2006, Blogger Debbie said...

Max did great on the Tenex for about a month or so and then we started having significant behavioral problems. Although there's nothing in the literature to indicate Tenex would cause agitation and opposition, it seems as though that's the effect it had on Max. (I'm planning on blogging about this more.) So we've taken him off of it and seen improvement already. We're now trying something new but it's too soon to say.

Max wasn't on ADHD meds while he was taking the Tenex, although he has been on stimulants in the past.

Please keep me posted on how Lucas does with the Tenex. And thanks for reading!

 
At 5:08 PM, June 02, 2006, Blogger Mrs. Darling said...

My daughter is nine and has a sensory processing disorder and oppositional defiance disorder. I notice we have some of the sane links on our side bars. Lol
Came here from Parenting isnt Pretty. I'm going to bookmark you if thats okay.

 
At 5:50 PM, June 03, 2006, Blogger Debbie said...

Thanks for visiting. And of course you can bookmark me! I appreciate your interest. I'll check out your blog, too. Hope your daughter is doing well.

 
At 7:32 AM, October 19, 2006, Anonymous Anonymous said...

My son has adhd but has been having behavioral problems in school so they suggested he take his adderell and half a tenex and half a tenex in the afternoon. Does anyone have this similar situation and how it has worked for them.

 
At 9:01 AM, March 07, 2007, Anonymous Anonymous said...

I just found your web site today while I was searching for some answers to why my daughter has started to pick at herself again. She is 9 years old diagnosed with ADHD and most recently Depression. She started taking Tenex last November and she started on Zoloft and Focalin in January. After a month of being on this combination of drugs she started picking again. She was doing this when she was on Concerta, but stopped when she went off Concerta. I was glad to read that some of the problems that Rachel is having on Tenex there are other that have had the same problem. Rachel has been very oppositional and has an unexplained agitation that she did not have before. When we mentioned the picking to her doctor last week she upped her Zoloft. Rachel is still picking to infection on her hands now. I have a call into her doctor today.

 
At 6:31 PM, June 02, 2007, Anonymous Anonymous said...

Our son is 4 years old and has infrequent violent outbursts. They last about an hour, include "I hate you," "I'll kill you" and "You're stupid!" I can't tell you how much it breaks my heart because 95% of the time, he's a charmer. He's had problems at pre-school when he has a tantrum, of course, they don't know how to handle, and it's gotten us to a psychiatrist. He's prescribed Tenex after seeing a full-on tantrum and we've been resisting. Does anyone know ANY kid who is this young and taking Tenex? Or any other great info sites for children this young? I need all the help we can get. Thank you and LOVE your site!!!

 
At 8:56 AM, September 21, 2007, Blogger Lisa said...

Is there any current comments on this website. I am new to Tenex and need some guidance.

 
At 7:48 AM, September 28, 2007, Blogger Debbie said...

Hi Lisa,

Thanks for visiting. You are welcome to email me directly at debbie@ourspecialkids with any questions you may have. I would also encourage you to visit my website, www.ourspecialkids.com, and post your questions on our parent forum.

Best,

Debbie

 
At 10:33 AM, October 28, 2007, Blogger Unknown said...

This is an emergency...I need to know if TENEX has a favorable taste. We need to crush it up and put it on waffles because Lucas will not swallow pills. He needs some hope that he will not suffer every morning, taking his medicine, and that his tics will go away.

 
At 8:28 AM, October 29, 2007, Blogger Debbie said...

Erthgrl715, I'm sorry to hear your son is struggling with tics and with medication. I'm afraid I don't remember if Max took issue with the taste, as he hasn't been on Tenex for a long time. If your son has troubling swallowing the pill, what about crushing it up and hiding it in a spoonful of yogurt or chocolate pudding? That's what I used to do when we first started Max on medication, before he was old enough to swallow a pill. This way, your son won't taste anything. Good luck.

 
At 11:17 AM, November 14, 2007, Anonymous Anonymous said...

Lucas has almost lost his tic, and it only shows up when he is upset. He takes his Tenex nicely in chocolate milk in the morning now (it tastes like cherries). I believe the switch from Adderall to Tenex has been a good move so far. It's only been a couple weeks though. We shall see. Wish us luck, and thank you for the post above.

 
At 9:39 PM, November 30, 2007, Anonymous Anonymous said...

We are starting Tenex tonight for the first time. My son is 15 and has severe explosions. He has bipolar and ODD. I am not sure that it is what he has, but they are trying to find something to calm him. He takes 10mg of lexapro and now this instead of Geodon. I am worried. Is this messing with his heart. We are lowering his blood pressure. What are the long term effects of this? I am desperate, he controls our household. I know this is a common fear and my son is alot older than everyone elses on here, but I still worry none the less. I will let you know the results.

 
At 4:05 PM, December 01, 2007, Blogger Debbie said...

Kiki,

I completely relate to your son running the household. You are right to try something new to manage his behavior. I understand your concerns about possible side effects. Just make sure his doctor is monitoring him and ask what signs you should look for that would indicate a problem with the Tenex.

Please let us know how things go.

 
At 11:08 AM, January 01, 2008, Anonymous Anonymous said...

my son has been on prozac since he was 7 for OCD anxiety and he is now 12.He now has ADD and we tried foculinjust madehim hyper.He is now on 125mg of provigil which improves his focus about 50%. He still has a lot of verbal impulsivity so we just started 1mg Tenex at night.I am worried about him being on 3 meds and also if the tenex will effect his athletic performance. Has anyone tried this combo and is it worth all the side effects ?

 
At 11:12 AM, January 01, 2008, Anonymous Anonymous said...

does anyone have a child on prozac, provigil and tenex ? it seems like so much, is it worth it ? my nephew has OCD, anxiety, ADD and impulsivity, this all the meds, but i wish he could take less, what do all these do to the body and brain ?

 
At 6:43 AM, January 31, 2008, Anonymous Anonymous said...

I have a 7 year old who recently started Tenex .5 mg 3 times a day. We are only 2 weeks in, but I have seen a ton of improvement in tics, impulsivity and agression! Prior to this I have many natural remedies, but didn't see enough improvement to consider it worthwhile for him. Has anybody had an issue with the doctor allowing the school to give the medication? We see our son's meds wearing off around 1:30 in the afternoon, but the doctor refuses to sign the forn (even though she prescribed) she "doesn't want to get the school involved" does this sound strange to anybody else? Also, for those of you who have/had children on Tenex, what was the dosage? Maybe his morning dosage can be upped to .75 mg since it has a 16 hour half life?

 
At 8:30 AM, January 31, 2008, Blogger Debbie said...

Hello,

I would push the doctor for more of an explanation other than he doesn't want to get the school involved. My daughter has asthma and the school office keeps an inhaler for her for when she needs it. I'm sure she's not the only one in her school who requires medication during the day, nor is your son. Which doctor is prescribing the Tenex? If it's your pediatrician who won't sign the school form, try your neurologist or psychiatrist or any other MD who is treating your son.

Let us know how it goes.

 
At 5:50 AM, February 01, 2008, Anonymous Anonymous said...

Thanks for your response Debbie,

It's his ped. who is the prescribing doctor. I've left several messages with the nurse, but they are so difficult to get ahold of! I have a check up with him on next Friday, so I'm going to bring the form. Yesterday, he missed a dose because his father picked him up at school (we aren't together and he isn't the best communicator). Normally I have the nanny give him the dose when he gets out of school. So I'm going to send a medcine journal with him in the future, hopefully this will help.
What meds is your son currently taking? Have you ever heard of Biofeedback? Check out smartbraingames.com I'm trying to do this with my son, but it's very hard to do at the end of a long day! His aggression is much milder on the Tenex so I'm going to start up again this weekend.

 
At 7:02 AM, February 01, 2008, Blogger Debbie said...

Hi,

Thanks for keeping us posted!

A medicine journal sounds like a great idea. It also sounds like you're going to have to be assertive with the pediatrician, so don't be afraid to do that! :)

I have heard of biofeedback and have always been curious. I will check out the site you recommend.

My son Max hasn't been on Tenex for a while; it helped him in the beginning but then he seemed to have a bad reaction in the form of a world-class rage. This was some years back. Unfortunately, the rages, in recent months, have become a regular thing. He's been on Abilify for mood and Luvox for OCD for more than a year now, but in the last week we've added Depakote to help stabilize his mood. It's been rough around here of late. Am I the only parent here who sometimes feels as though she has post-traumatic stress disorder?

Keep us posted!

Debbie

 
At 9:52 PM, February 03, 2008, Anonymous Anonymous said...

No, actually before the Tenex, I was begining to flinch when I had my back to my child, he was having such of a hard time controlling his anger!

Oh, http://www.eeginfo.com is a great site for understanding how the biofeedback works for a variety of conditions.

Yes, I'm going to have to get a little more firm with the Ped. It just should have to be so difficult to get a form signed. Last Oct. he went through the autism clinic at our local Children's. I received the bill, but never the primary report. I received a secondary report that says "See primary report for more specific recommendations". When I asked I was told that the Dr. had a death in the family. Now 4 months later, still no report. Sometimes it's like pulling teeth and I'm just trying to get him off to school, me to work (I'm a single parent) and have a pleasant evening.

How is the school for supporting the behaviors? We have some pretty good lectures put on by the IEP program, which I can never seem to make it to! Tomorrow addresses challenging behaviors. I think it's great that the school is so plugged in!

Sometimes you just have to remember to breath and remind yourself that God gave him to you for a reason. Now, that reason can vary from day to day :) Good Luck and I think he's really lucky to have such of a plugged in mom!

 
At 5:04 PM, February 05, 2008, Anonymous Anonymous said...

I have been reading this site for a while, but this is my first post here...
My son Zach will be 5 in May and has been taking Tenex for 6 months. At first it was wonderful, he was a tad sleepy but then the tics and the ADHD seemed more controlled. It stopped working after about 4 weeks and we increased from a quarter to a half, and then again 6 weeks later to 3/4 and now we are up to 1mg. in both the morning and the late afternoon. This seems like a higher dosage then most, and the ADHD seems back to before we started it. The tics change all of the time and the last week have been mostly sniffing all of the time. I have noticed a little aggression over small things and I'm not sure whether to blame the meds or not, it started at half and is the same on the full 1mg.
We have an appt. with our Dr. next month and I'm torn over what to do. He starts Kindergarten in June and I had hoped this was the answer, but I fear he will not be able to sit still and listen, not to mention the constant humming (anyone else deal with that?), and now the sniffing.
Any suggestions? I myself take Clonodine for facial tics and have for 20 years, but my son is closer to Terets, and ADHD is a big factor with him as well. Other then that no problems....LOL....any ideas would be appreciated.

 
At 9:08 PM, February 06, 2008, Anonymous Anonymous said...

My 8 year old son just started taking half a tenex an hour before bedtime to help with oppositional behavior at bedtime and to help him fall asleep. He was on Daytrana for 1 year and then it stopped working. He was switched to Concerta two weeks ago but the night oppositional behavior got worse. So our doc. added in the half tenex pill at night. Does anyone know if this works the first day or does it take a few days or weeks to start working the doctor didn't say and I forgot to ask. Does it help other kids fall asleep when the stim. is keeping them up?

 
At 11:33 AM, February 10, 2008, Anonymous Anonymous said...

My five year old is on Tenex when he wakes up along with a half a Prozac a Hydroxzyine and two Lamictal then a 3:00PM when he gets out of school he takes one Tenex and 1 Hydroxyzine then at 8:00PM he takes 1 Clonidine 1 Hydroxyzine his other half of Prozac.He has severe mood swings hyper problems and sleeping problems he has med managment with a professional that only deals with kids.Hes doing pretty good on his meds except on weekends because hes bored and doesnt get enough energy out so he doesnt sleep well.I am not looking forward to summer he clearly might need a med change.

 
At 9:34 PM, February 16, 2008, Anonymous Anonymous said...

I have the 7 year old on tenex .5mg 3x/day. I started noticing postive effects within the first 2 days. He's been on the meds for about 6 weeks and we are still seeing improvements. It can take 2-4 months to see all the benefits. If your son is only getting the tenex twice a day, maybe the doctor may consider increasing it to 3x per day? Also, they usually prescribe Prozac for depression and Zoloft for anxiety. Are you certain that there is not an anxiety component to his behaviors? For the other parent asking about sleep. My son is sleeping better on the tenex than without it. He isn't currently taking any other medication.

Is he in daycare during the summer?
Let me know how things go.

 
At 7:37 PM, March 12, 2008, Blogger Unknown said...

My son who just 7, started 1 mg of Tenex 1/2 in morning and 1/2 before bedtime. He was on Daytrana before, but it caused him to have an eye-blinking tic. When we first started the Tenex he took 1/2 a pill for four days and then we upped it to 1/2 2x a day. After 3 days of being on it 2x a day he seemed very tired so the pediatrician suggested just giving him 1/2 at night and 1/4 in the morning. After five days of this regimine, his tic is worse than ever and he is very emotional. I 've also noticed he is over reacting to things, and crying in the early evenings. I read that reducing the AM dose to 1/4 tablet may have actually induced more tics. Has anyone had a similar experience. Also, is his "over reacting" a sign that the tenex may be wearing off? Any advice is appreciatted.

 
At 6:27 PM, March 13, 2008, Blogger Rachel said...

I have a 9yr old who has been on Tenex for 2 years he's doing excellent.. prescribed for ADHD.. I am an ABA therapist and have a 7 year old boy with autism I treat and can see this doing miracles for him. He scripts and has vocal stereotypy like I've never see in any other client. I'm looking for info on this and if it has worked well for children with serious stereotypy that have autism and or any info on Autism and Tenex.. All the Dr.s want to do is prescribe stimulants no no no I really hope someone has info for me
-Rachel

 
At 7:30 PM, March 16, 2008, Blogger gloworm said...

Anyone have any info about the long acting version of tenex that is coming out? My 7 year old son took tenex for 6 months but the sedating effects were an issue so we stopped - the new version is supposed to eliminate the drowsiness side effects...

 
At 5:39 PM, May 19, 2008, Anonymous Anonymous said...

MY DAUGHTER IS GOING TO STArt TAKING TAKING TENEX. WE WILL START TOMORROW NIGHT? ANYTHING THAT I NEED TO KNOW. SHE DOES HAVE ADHD AND THEY BELIEVE THAT SHE IS BIPOLAR. ANYTHING WOULD HELP. THANKS

 
At 12:35 PM, May 21, 2008, Anonymous Anonymous said...

I'm so glad I've found your blog. It makes me feel less alone. My 10 year old daughter started Tenex 3 weeks ago. I haven't noticed much improvement in her tics but I'm hopeful.

 
At 4:14 PM, May 21, 2008, Blogger Debbie said...

You are not alone! :)

We'll actually be starting Max on Tenex in a few days. It's been a few years since we've tried it. He's been on many different meds over the years and we reached a point where the meds were making him worse. He's been off all meds for about a month and we're kind of starting all over again. Our doc said Tenex could take up to 8 weeks before it takes affect...so hang in there!

 
At 2:09 PM, May 23, 2008, Blogger hhernand said...

Hi Everyone,
I am glad to see other parents that have children taking Tenex giving advice. I have a 3 1/2 year old son who is taking Tenex three times a day. We started with only a quarter of a pill three times a day, and now are moving to a half of a pill three times a day. He was prescribed the Tenex for hyperactivity and self-regulation. He was diagnosed with PDD-NOS, but is still being watched for full Autism. He has a severe language delay. He has no fear of danger, and I believe that the Tenex is helping him to focus better on his surroundings. He is not as impulsive now, and will look to an adult for a visual "ok" before doing something that he should know is wrong. The only thing that worries me about the meds is that he is so young. I hope that there will be no long term effect on his body or brain. There doesn't seem to be any children that stay on it for a long period of time. He has been on it for about six months. Before the Tenex, he was taking Clondine, but that made him to sleepy all of the time. My son is at times very happy, but as you know things can change in an instant with our kids.

 
At 2:08 PM, June 01, 2008, Anonymous Anonymous said...

my son started tenex May13 .5mg twice a day his doctor increased it to 1mg in the morning and .5 at nite. I still have not seen any improvements Amina

 
At 2:17 PM, June 02, 2008, Anonymous Anonymous said...

My daughter has taken Tenex for 5 years for tics. As she grows they have increased the dosage. It has worked wonders for us.

 
At 8:49 AM, July 15, 2008, Anonymous Anonymous said...

Just wondering how things are going with Max after trying Tenex again. We started our 8-year-old on Tenex about a month ago and have seen an increase in anger and overreaction during that time. It is hard to tell whether the behavior is related to the medication or was going to happen anyway. Not sure what we are going to do at this point - it may be that we need to give Tenex more of a chance to start working, or maybe we will try something else. Seeing the doctor in a few days. Thanks for the site, and best wishes to everyone. Hang in there.

 
At 9:06 PM, August 17, 2008, Blogger Unknown said...

My eight year old son has been prescribed Tenex for tics and ADHD and I am so very nervous about putting him on it now I have read all your comments! I can live with the facial tics (and I think he can MOST of the time), but the ADHD is really bad and I just don't know how he's going to be able to sit through school when he goes back in three weeks.

His neuro is starting him off at 1mg once a day, but it sounds to me like you are all saying the effects are going to wear off before the end of the day, and we were given no info as to when in the day to give it to him.

Any advice, thoughts??

One nervous momma!

Shosh

 
At 8:45 AM, August 23, 2008, Anonymous Anonymous said...

I have a child who will be 4 in october- just started on Tenex 5 days ago for implse control- takes 1/4 mg in a.m. & again at noon. Since day 1 of meds she has been urinating in her pants every day. Anyone else seeing the same side effects with this med?

 
At 11:20 AM, September 10, 2008, Anonymous Anonymous said...

Hi, my 6 year old son has reasentely got out of brentwood and they put him on tenex ,1mg. they did not give him meds. to take home so last night he was shaking really bad and pulse out breaks were really horriable , he keeps blaming me for everything not his father just me.i seen the good improvements in him while he was over there ,but i dont know if it was because he didnt have the medicine last night, i just expected things to look brighter when he got home, am i asking for to much I JUST NEED A LITTEL ENCOURAGMENT. his peditrcion has took over case and has put him on it once a day im scared im gonna be going through this every day im scared. can you give me some advise.

 
At 12:35 PM, September 10, 2008, Blogger Ghrigsby Family said...

Hi, I have a 6&1/2 year old who is about to be 7. He just got out of a in patient behavior facility where the monitored him for 2 weeks and diagnosed him with ODD. Before he was admitted, he started taking Concerta 27mg once daily and has been on that for about 2 months. While at the facility, they added Tenex 0.5mg three times daily, and he was doing really good when I would go and visit him. After about 1 week, then switched him to 1mg twice daily for reasons I don't know and can't get any answers. He was discharged yesterday with no prescription. He had a dose yesterday morning of 1 mg. , but had no more last night. He was shaking really bad and just telling me that I wanted to get rid of him, and couldn't sleep wide awake, I was loosing my mind, and couldn't reason with him at all, it was worse than before he left to be evaluated. I am just looking for encouragement because him pediatrician finally called in his medicine today, and she only wants him to take 1mg at night. What should I do, Do you think that the tenex can make that much difference and if so, shouldn't he be taking 1 in morning before school? Please help - stressed to the max in Mississippi
ThankS!!!!! April

 
At 8:42 AM, September 12, 2008, Anonymous Anonymous said...

Hi! My 8 year old son took Tenex when he was 7 for about 5 months. Primarily for hyperactivity/adhd symptoms. I can't remember the dosage, but he was always tired and needed a nap every day after school. We took him off of tenex because he developed severe and chronic migraine headaches which haven't resolved a year later. He now also has spasm/tics on the right side of this face. Doc says these symptoms are not side effects of the tenex - but we wonder. He never had any tics/migraines before the tenex. Just watch out for any possible side effects.

 
At 4:05 PM, September 12, 2008, Blogger LeighRacin said...

Hello,
My son started taking Tenex when he was 4 1/2. He is now 6 1/2. He primarily takes it for his explosive and impuslive behaviors. It REALLY helped in the beginning, but now I am wondering. However, he started 1 ml of prozac for some OCD tendencies. We tried increasing and he seemed MORE aggressive.

My question to any of you is this...did you notice Tenex quit working, or if taken with Prozac it is not as effective. Also, if any of you know if prozac made your child more aggressive.

I am contacting our Behavior specialist to re-evalute...again. I was SO against medicine..for the first couple years (before starting them). But, once on them I noticed he was a happier child. But, maybe he no longer needs them? Any feedback would be great:)

 
At 7:02 AM, September 15, 2008, Anonymous Anonymous said...

Hi,
I have a 10yr old daughter which
has severe shoulder movement jaw movement always not knowing what to do very unorginized does not care about personal apperance if you ask her to change because we are going out to eat she gets very
mad then it ends up her punching the walls banging her head against walls throwing chair, until we hold her so she doesn't hurt herself. I really need help. she always ends up hitting me or punching me.The older she gets it's getting more physical.she's been on all different medications now the're suggesting tenex.Id like some feed up.

 
At 11:10 AM, September 16, 2008, Anonymous Anonymous said...

Hi, My name is Ashley, I am 18 and have had ADHD since 4 years old. I take 54 mg of concerta, and I am now just starting on Tenex, be careful though because both medications wil lower his blood pressure (which is good) but i dont think they should add a third medication...that might be too much. I recently found out that taking concerta for so long actually made me dependent on it, so be careful about that too.

I bet your son is going to be a genius!

 
At 12:23 PM, September 17, 2008, Blogger Mommy4 said...

My 6 year old son started taking tenex last month. He takes 1/4 in the morning and 1/4 at bedtime. He is still sleeping in class for 1 to 2 hours. I notice that gloworm state her child was going to start on the non-drowsey medication and I wanted to know the name of that medication. The teachers are complaining about him sleeping all the time.

 
At 5:30 AM, September 25, 2008, Anonymous Anonymous said...

My son just turned 7yrs old and began having arm and head tics about 2 mths ago. I just took him to a nuerologist who did bloodwork hoping he was a carrier of "strep". He place him on the Zpac for 5days, which didn't help at all. He was also making the "mmmm" sound which seems to have subsided. he just started him on 1mg of tenex in the morning and 1mg at night after meals. Can anyone help me about how long it would be b4 I would start hopefully seing results. I've been reading the blog for the first time today and have noticed alot of you have children with ADD or ADHD. Does it work for a child with just head tics? I'm really worried about him! I feel very depressed!

 
At 6:52 AM, September 25, 2008, Blogger Mommy4 said...

Claire, it took a few days for the Tenex to show results, not even a week in my case. I can reduce the medication and my son's behevior is out of control, then I would give him the recommemed dosage and he is a complete diffrent person.

 
At 5:55 AM, October 01, 2008, Anonymous Anonymous said...

my son Fox started Tenex 6 days ago. He is four years old and is off the charts with his ADHD so much so it increased his ODD. He has an older sister who is sick and spends a lot of time in the hospital, so Fox has reasons to feel the way he does. My question, since starting Tenex Fox has been pretty well behaved, doing better in his psyco-social preschool. BUT I have noticed him being a little bit more easily to cry over something small...is this a side effect that with time will wear off?

 
At 4:42 AM, October 04, 2008, Blogger Claire Bockenhauer said...

my son has now been on tenex for approx three weeks and i have noticed a chg in the "mmm" sound and the ticing in his rt arm. But the head tics and eye tics have not subsided. He takes 1mg. in am and 1mg. pm. Does anyone have any suggestions ...Should I keep him on it longer or go back to the dtr. thanks for ur help!!

 
At 4:48 AM, October 04, 2008, Blogger Claire Bockenhauer said...

ANY SUGGESTIONS ON HOW LONG TO KEEP MY SON WHO IS 7 ON TENEX. HE'S BEEN ON IT FOR APPROX 3 WEEKS AND I HAVE SEEN A CHG IN THE ARM TIC AND THE "MMMM" SOUND BUT THE HEAD AND EYE TICS HAVE NOT SUBSIDED AT ALL. SHOULD I KEEP HIM ON IT OR TAKE HIM BACK TO THE NEUROLOGIST. THANKS!!

 
At 8:20 PM, October 05, 2008, Anonymous Anonymous said...

I posted earlier. My daughter is 13 and takes 2.5 mg twice a day for tics. She stated on a low dose and worked up. She gets shaky when she forgets to take her medicine or she has taken it later than usual. I make sure she takes it at about the same time each day. We also make sure she eats regularly and often needs a snack in between meals. At first, she did get tired, but that eventually went away. Side-effects will vary by child. This site talks a lot about tenex. www.ihavetics.com/Treatment/Medicine/tabid/110/EntryID/6/Default.aspx

 
At 10:23 AM, November 16, 2008, Anonymous Anonymous said...

Everyone that has a vested interest in this blog should read: "Against Medical Advice" by James Patterson and Hal Friedman. It is a beautifully written account of one family's struggles with severe tourettes and OCD. It is told from the boy's perspective and really opens your eyes to how it must feel feels to be in his shoes with all of the social stigma that comes with it.

It seems that most of you have children that are pre-middle school. Buckle up. If you have a kid with a tic disorder and OCD and anxiety and maybe inattention or any combination, middle school is tough. Kids that age are all pretty rotten to each other whether they have disabilities or not. Your sons/daughters can weather it beautifully, but they will need your special support and advocacy.

Meanwhile, my 12 1/2 year old son has been on Tenex for a year and a half. I did not ever notice an overnight "wow" factor with the drug although we had no ill effects either so I kept him on it. (1 mg morning 1 mg evening). However recently I started taking him off because his tics seem to have improved a lot (gratefully they often slow down a lot by his age). I noticed quite quickly that he is far more restless and has some new movements that weren't there before. Bottom line, I think it actually was helping with the lower order tics, not just the neck thrusting head shaking one that he was on it the first place for. He is back on it and I'm waiting to see if it settles him down again. Good luck!

 
At 7:28 PM, February 10, 2009, Anonymous Anonymous said...

My son, is 7 soon to be 8 in June. He has ADHD and he started out taking Focalin XR. I guess he out grew the Focalin XR. Now he is take Vyvanse 30mg since January 09.
His behavior and focusing in school was getting worst si that 's why we switch to vyvanse I some postive results but I still have some concerns. So we saw a child behavior specialist in ADHD so he started him om .5 of tenex at night for two weeks and thenstart .5 in the am along with the Vyvanse to increase his attention. I hope this works for him. Because I don't know what else to do.

 
At 11:25 AM, February 18, 2009, Blogger clsaus05 said...

My son will be 4 on the 25th of this month. Dad has tourettes and we knew that this day would come. He has not been excessively violent to any kids at daycare or preschool; however, I cannot even attempt to discipline his in fear that my entire day will turn into hours of tantrums. He has been diagnosed, so far, with Anxiety Disorder, ADHD, and Post Traumatic Stress Disorder. I feel as if I am in over my head and cry on a daily basis because I hate to see him so sad and upset. He just seems to get so frustrated and then just breaks out into tears over any little thing, i.e. hang your coat up, kid telling him his boots were not boots. They have started him on Tenex as of yesterday, and to be honest, last night was the first night that there has not been trouble getting him to sleep since the day he was born!!! I have no idea what I am in for and scared to death that he will turn out to be just like his dad (which is not a good thing!)

 
At 12:02 PM, March 04, 2009, Anonymous Anonymous said...

Our daughter is 4 and has been off and on tenex now for almost 9 months. Crushing it up is OK, it doesn't have a bad taste to it. We are waiting for the time relase tenex to be release frm the FDA and as soon as its availale we're going on that. In our experience, the tenex was GREAT and then it was like she got used to it, behaviors came right back. We stopped and started on Abilify (sp?) and I DO NOT recommend that in smaller kids - it magnified the tantrums by 100! We went off and started back on tenex, again it was like a week she was not on anything so we noticed a difference right away again but now it's not working so well. We are hoping and praying the time release version of the tenex will be our solution. It's tough, I know, I understand, I get that, just know you are not alone!!!!

 
At 8:47 PM, March 28, 2009, Blogger jm said...

My 7 year old has been on Tenex for ADHD for a few months. At first it worked great. He was very cooperative and agreeable. Now, it's a nightmare. He is worse than before-even after just taking his dose he screams obscenities, kicks me and throws things at me. When I didn't give him the Tenex tonight for the first time he was much more tolerable. My son has been on many kinds of stimulants, which had the same effect-great in the beginning, then worse than ever. His doctor thinks a med like clonopin may work, but I hesitate to put a 7 year old on an anti-psychotic. This is a horrible, rocky, road for my son (who by the way, is doing great academically) and my husband and I.

 
At 3:38 PM, March 29, 2009, Blogger Mommy4 said...

Jim, I know what you are going through. But my son is also 7 and on risperidone 0.5 mg. He is doing better on this drug then when he was on the Tenex. But, i too can see that it is wearing off as the weeks past. I really would like some kind of miracle drug to deal with the tantrums and disobiented behavior. My son has been suspended 5 times this school year.

 
At 12:06 AM, April 03, 2009, Anonymous Anonymous said...

I have a 13 year old who has had tics since age 7.We went through many medications including tenex, clonidine and now haldol. The haldol works best, but the tics always come and go regardless. You need to realize that adhd is so overly and wrongly diagnosed. I suggest only going to a specialist for diagnosis. A pediatrician is not qualified to diagnose neurological disorders. Also realize that all adhd meds are stimulants and CAUSE tics, not just bring them out as SOME misinformed Dr's. would like you to believe.Do not use risperdal or the other meds similar to it as the side effects can be permanent and are worse than tics. I suggest being proactive and do your research before deciding to allow some Dr. to prescribe meds for your child.

 
At 9:13 AM, April 05, 2009, Anonymous Anonymous said...

I note so many people here have had initial success with Tenex and then felt that its effectiveness wore off at some point. I wanted to note one experience that people should check. My son takes Concerta for ADHD (now age 9, started taking Concerta at age 6). He had mild periodic tics before taking Concerta. Tics were GREATLY exacerbated with tics, with major vocal and motor tics that were very disturbing. We added Tenex on recommendation from a motor-specialist pediatric neurologist (1 mg with half in the a.m. and half in the p.m.). This did the trick almost immediately. After about 1 year, the tics reemerged. We could not figure it out. Then, we noticed that the reemergence of tics coincided with the Tenex changing color. The pills were originally white and now were pink. Walgreens explained that it was simply a different manufacturer, but the same medication. Well, we went back to the original manufacturer after 3 months of tics, and the tics immediately disappeared again. We now have a standing order to make sure we get the "right" kind of Tenex (guanfacine).

Maybe this tidbit may apply to some else's situation?

 
At 5:48 AM, May 20, 2009, Anonymous Sheila said...

My daighter is now months away from her 9th birthday. We ahve tried several medications for her ADHD. She is a very bright child who struggles with her inability to focus and control her extreme hyperactivity. We tried ABilify and it had NO effect. Next step: Concerta. Worked wonders. her grades were high Honor Roll and she was tow grades abovein reading levels and math comprehension. Howver, her growth suddenly STOPPED! A common side effect of Concerta is a loss of appetite that can cause growth faiure. However, lower doses and even discontinuing medication proved useles. She has fallen form the 70-95th percentile for height to the 10th. We ahve tried Adderal and she developed severe anxiety/panic issues. We have tried practically every alternative. Her grades declined to reflect the posted speed limit signs in a city and even lower. We are now trying Tenex as a last reort. If this proves unsuccessful, she may have to be med free while they dort out her growth failure. She has had extensive testing to determine the cause of gorwth failue. WHile EVERYTHING comes back normal, they feel it is medical not medication related. However, we do not see the pediatric endocronaligist for another 2 months. Mydaighter is mosserable and can not stand her own inability to control herself. I hope the Tenes helps in the meantime. It owuld be great to get a final diagnisis on her growth that allows her to have the proper medication. We keep our fingers crossed and hope the best.

 
At 2:05 PM, June 08, 2009, Blogger HilleMary said...

Hello to parents asking about Tenex longer term with young kids - I'll tell you about my son. He is now 9 and has been taking Tenex since he was 5. Diagnosed with ADHD and had serious issues with impulse control. First week on it, he slept a lot. Then he was better and leveled off. The dosage increased with his weight. He now takes 2mg 2x per day, am & pm. He sleeps at night but still has tons of energy (controlled though) during the day. He had taken Adderall but since the Tenex slows him down enough to think, it's proven to be unnecessary and not all that helpful after all.

So, it's been 4 years now. He had been the kid the others were all hiding from because they didn't want to get hit, he never slowed down enough to play a game, never sat to read a book, went from point a to b to c like a wild child. Not to mention the hours it would take to calm (or collapse) enough for sleep.

Now, he is doing great in school (just got all As and Bs), he sleeps at night and for the most part, controls his actions :)

If this helps anyone, I'm glad - it really is the #1 lifesaver for us.

 
At 6:47 PM, July 26, 2009, Anonymous Anonymous said...

My 9 1/2 yo son started with a eye-jerking tic about 2 years ago. Tics were on/off. Some shoulder shrugging at times and eye tic changed to blinking with rolling. Past 3-4 weeks developed an abdominal tensing tic. Energetic, and A student. 97 percentile standardized testing, but hates to read novels (poor concentration/slow). Fights all the time with older brother who picks on him all the time. No behavior issues or aggression anywhere else. Likes to play chess. His energy level does appear to make him uncomfortable at time. He expresses so. The tics are "bothering him" and would like them to stop. My question for those who have experience, would you medicate (Tenex?) in this situation? The tics are the big concern (oculogyric/blinking) and now abdominal tensing most every day especially when tired. No vocal as I see it. Like most, I hate the idea of medication, especially mood altering types. Do not want the medicated "haze" or personality change. Would like tics to stop and decrease "excess" energy.

 
At 1:07 AM, August 01, 2009, Anonymous Bobi said...

first of all, thank you SO much everyone for sharing your stories! i came here looking for info. on Tenex, but got so much more.so glad to know that we're not alone on this ride.
our 8 yr old son, Koah, has always been a handful. around the time he started pre-k @ 3.5 he began having pretty severe outbursts & rages... and NOT just @ home! as he aged & matured some things changed, but not solely for the better. we decided to homeschool him & his now 12 yr old brother at the end of their kinder & 4th grade years... neither one of them really fit inside "the box" at school... best thing we could have ever done!
i went every route i possibly could to avoid a dx for Koah... acupuncture, psychotherapy, herbal therapy, chiropractic therapy, dietary changes...all the while knowing that he had to be ADHD. it all had some benefit, but not for long.
about a yr ago we decided to take him to a child psychologist & a pediatrician to be evaluated... they told us very quickly that he was "classic ADHD". we then decided to give Concerta a try... and it was AWFUL! after a few weeks he developed tics, was way more emotional then usual, clingy, lost a bunch of weight -though he is a big boy-, couldn't sleep and was just not himself. of course then the doc suggested Clonodine. he slept, but the tics got worse and he was completely disengaged from us all. all the while the doc -who never addressed Koah directly- wouldn't do an EKG & blood work like i asked. i wasn't terribly impressed.
we were disturbed w/ the whole thing so we took him off of it all, and when we did, the psychologist he'd been going to said he wouldn't see him unless he was medicated. unbelievable!
so, that was in Jan. this year. he's had some severe outbursts, has close to zero impulse control, gets angry quickly, is combative, has multiple tics that come & go, hyper focuses... but is a really caring, sweet, smart, fun loving boy! i had to do something!
around April we decided to get him into see a child psychiatrist... we had to wait til just a few weeks ago to get into see the one we wanted, but it was well worth the wait. she's wonderful! after 2 visits she's come to this "triad" conclusion that she sees a lot in boys... ADHD, OCD w/ tics & anxiety. makes total sense to me! she pointed out to me that he never should have taken a stimulant because it just exasperates his OCD & anxiety. that's when she suggested Tenex... and now i find myself here getting some great first hand info.
Koah is very well informed & willing to do it... he says he wants to feel "good" and calm down. breaks my heart to see him struggle & i know the feeling since i, too, have anxiety issues.
we'll be looking for a new pediatrician next week to order the labs -yes, the child psych insisted we actually do the tests i'd asked for previously! yay!- and go from there w/ the new med. wish us luck... and much luck to you all on your journeys with your children.

 
At 12:01 PM, October 11, 2009, Anonymous Anonymous said...

I can only agree with all of you on the tenex we started it back in June, and like everyone else it worked great for the first couple of months now back in school and the behavior the defiance is back and with a vengence. we too are at wits end, stimulants are a night mare in it self. We just need some answers.

 
At 7:45 AM, October 15, 2009, Blogger Unknown said...

You should try Concerta and Rispondine, and get your son school to place him on a 504 plan. This has changed my son. He too was on tenex and it only worked for a short time. Please try this and let me know what was your outcome.
My son is enjoying school now and is learning to read. He can ride the bus without any problems, but he still has some anger issues. But this combination along with counseling helped my son so much!

Good luck to you. please keep me inform.

wrileywan34@yahoo.com

 
At 10:12 PM, November 09, 2009, Anonymous Anonymous said...

Today we start a new journey. My grandaughter has taken Adderall for about a year. She has developed a new TIC and her doctor prescribed vyvanse. After one day of exaggerated TICS she began Tenex today. I hope she has success. What is the best time table between the dosage that is cut into two parts?

 
At 1:30 PM, November 11, 2009, Anonymous Anonymous said...

My 10 yr old is going to start adderall this weekend w/tenex and i'm praying that it helps him.He is a very smart kid but he has had really bad tics and a shoulder thing that he did so we took him off meds altogether to alleviate him.But we think he is regressing in school and just all around.Just wanted to sorta vent about this a lil...just a worried dad who wants to help his son.

 
At 10:07 AM, November 28, 2009, Anonymous Anonymous said...

My son is 5 yrs old and he started Metadate CD 20mg in morning and 10mg at school after lunch. he started getting a facial tic where he would look to the side with his eyes but wouldnt move it head. it was giving me a headach just watching him. his doctor started him out on tenex 1/2 pill at night for the first 5 nights and the very next day the tic was gone. i was shocked. aftr 5 nights, we gave him a 1/2 pill in the morning. The tenex and Metadate have worked so good. his ADHD is almost under control and the tic went away, but now he has another tic. he squishes his nose all the time. im going to call his doctor and see if we can put him on 1mg instead of .5 mg. now.

 
At 3:28 PM, December 10, 2009, Anonymous Anonymous said...

My 6 yr old son is currently in a partial program in the mental hospital for evaluations and observation. He was diagnosed with ADHD and anxiety disorder with tics. The doctor increased his Zoloft and also put him on Tenex. My son was oppositional at school and would hide under the table and seemed overwhelmed, but her was never violent. Within a week of being on Tenex, my son was having violent rages- throwing chairs and tables and biting himself. He was worse than when he went into the hospital! I confronted the doctor yesterday who agreed to take my son off of the Tenex. Last night my son went to bed for the first time in a week without flying into a screaming rage. He had a great day today. He is responding to the short acting Focalin. What I want to say is- Be your child's advocate. You know your child better than anyone. You know when behaviors are getting worse. Speak up for your child when you think they could be having an adverse reaction to a drug. Tenex is a serious drug and not approved for children. Perhaps it does work in some cases. But watch you children closely as you would with any drug.

 
At 11:38 AM, February 26, 2010, Anonymous Anonymous said...

My son is 11, and was put on Tenex in December for Tics and ADHD. His attention and focus has improved remarkably, since we have increased his dosage to 1.5mg twice daily. My only concern is that he becomes over-emotional at times, and cries easily. He says he doesn't know why he does this. I notice it more in the evening. His neurologist wants to start him on the longer acting dose (Intuniv), because he has seen great results with other patients without the side effects. Is there anyone who has any experience with this?

 
At 11:31 AM, May 04, 2010, Anonymous Anonymous said...

My son is 4 years old and his Dr just gave him Tenex today to help with the outbersts and the hyperactivity that he has. He always said that it would help with getting him to sit to eat dinner and will help him with the whole potty training after taking a 180 on it all. I have read all of ur stories and i hope my come out just as good as all of urs.

 
At 9:17 PM, May 30, 2010, Blogger cscott said...

I have a 4 year old boy who has been taken Tenex for 3 months. Prior to, he was not talking. Within the first week we could understand him and he was communicating with words. Now his speech has exploded. He has been diagnosed with Autism. I am concerned with the long term effects but I want him to be able to communicated and do well in school. The only thing any one can do is pray and take it one day at a time. Enjoy the good when it comes and celebrate the accomplishments.

 
At 4:45 PM, October 02, 2010, Blogger The Agent said...

My daughter started taking Tenex at 15 after waking up one day with severe ticing due to anxiety. It worked wonders -- no side affects. Pretty soon she was down to 1/2 pill a day and now she is off entirely. No tics!

 
At 5:35 AM, January 06, 2011, Blogger Unknown said...

Reading all these comments has been so enlightening! Here's my situation: My son will be 18 next month. He is mentally impaired and has no language, but communicates with sign language and an assistive device. He has been on Tenex for the last 4 years for what his psychiatrist calls intermittent explosive disorder-no tics, no ADHD, nothing else. Now I want him to be off, but his father wants him to continue the meds. In the past my son has certainly had some truly frightening outbursts, but primarily at his father's house. I now know some of the situations that set him off. I'm not sure if the Tenex is doing anything anymore. What are the long-term effects of Tenex on a young adult? Any suggestions?

 
At 8:54 PM, February 14, 2011, Blogger Unknown said...

My 9 year old daughter is on Tenex for almost 2 weeks now- we started off with half a dose then this week the full dose. she gets headaches, fatigued and tonight she was very loopy and tired.. more loopy than I've ever seen her. She is also hungry a lot more. will this pass over time?

 
At 4:05 PM, September 22, 2011, Blogger Concerned mom said...

Hi my son was actually prescribed Tenex today... he is four years old and has started having violent outburst at home such as hitting hisself and others. he dosent have ADHD but was given the meds to help calm him down. he has a history of seizures but has free from them for over 1 yr. Is there any parent out there that has a similiar story that can lend some advice

 
At 4:15 PM, September 22, 2011, Blogger Concerned mom said...

My son was prescribed tenex for his violent behavior towards his family and also towards his self such as hitting his self in the head when becoming frustrated. He is only four and has a history of seizures but he does not have ADHD. He also is very defiant and has really bad tantrums. Im reaching out to any parents that can relate to what I'm going through and also to anyone who has advice about tenex ...

 
At 1:38 PM, October 11, 2011, Blogger Imnadvocate said...

I have read every blog posted here and now I am more concerned that ever about my son's medication change. First off, he has been taking Adderall for 11 years and I do not think it is a good idea for him to go "cold turkey" off the medicine and onto Concerta and Tenex. It seems to me the pattern here is that the behaviors are controlled for a short time and then reappear or are worse than before the medication. Would this be an accurate observation I am making? I know that every child is different but I see this as a thread. Time for some more research.

 
At 3:06 PM, November 04, 2011, Anonymous Anonymous said...

I am very scared my son was on concerta but only
worked good the first week. He his not sitting still and focusing in school the doctor is starting him on 1mg 1/2 in the morning to start he is 6 and in first grade. Will the make him sleepy or like a zombie ..

Please help.... doctor said try it if I not liking how heis then stop. I just very nervous about the blood pressure.

 
At 6:49 PM, December 13, 2011, Anonymous Anonymous said...

my 5 year old son is ADHD and OCD and AUSTISM he has been taking rebeca for about 3m now and its working good. he was kicked out of school 6 times this years . after a week of the tenex in combined w concert36 and methylin he is a changed kid he is learning more and getting rewards for being good . I thank God everyday!

 
At 10:09 PM, April 02, 2013, Blogger Amber Rae said...

Does anyone else have a daughter on meds? I've looked through about 1/2 the posts and I'm concerned about the Tenex causing issues months after taking it. Seems like few boys have had rage issues after starting it. Praying for all you strong, caring, loving moms.

 
At 6:15 AM, July 13, 2013, Blogger lovemychild said...

I've been reading your comments about tenex and many other drugs your children are on. Has some of you, if not all, tried gluten free, dairy free. vitamins and then a drug? I've noticed a big difference with my child. who is 9, when we stick to all of the above. It's all about consistency - which can be hard when dealing with a child who is impulsive and has side effects from these drugs. We are still figuring out the best "drug" for our child...if there is one.

 
At 8:26 PM, July 30, 2013, Anonymous Anonymous said...

My daughter is 7 and is on Tenex, may I suggest some speech and OT work before you start the med route? I only say that because some kids act out like that when they are having feelings they are unable to express...just a thought. Good luck!

 

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